[SydneyJean]

New Kid on the Block

by SydneyJean on Mon Apr 11, 2016 4:54 pm

Hi Everyone,

It looks like I have joined the ranks of MGUS. I am IgG lambda with 5 to 8% cell infiltrates. I would never have known had I not had a lymph node appear enlarged on a routine mammogram / ultrasound. Interestingly, my father has multiple myeloma, so we seem to provide validation of the genetic link.

I have two questions. The first is simply, what do you think I need to know as someone new at this? I have done quite a bit of Internet research, but know that your experiences are much more valuable.

Secondly, has anyone had problems with itching or rashes? I have had an itchy rash for at least three years. I have seen 5 dermatologists and 3 allergists and there has been no resolution. I was secretly hoping that this diagnosis would provide some answers, but the only related condition I could find was liked to MGUS kappa.

I thank you for any input.

Blessings,
Sydney

[Multibilly]

Re: New Kid on the Block

by Multibilly on Mon Apr 11, 2016 9:27 pm

Hi Sydney,

Sorry to see you joining our club, but welcome nonetheless.

Even with a case of MGUS, folks on this forum will tell you to establish a relationship with a top multiple myeloma specialist. You don't necessarily have to be routinely tested and seen by a top specialist, but having one in your corner and familiar with your case from the start is invaluable. If you let us know what city you are in, folks on this forum can point you to some good specialists.

Get to know all of your key markers, including your M-spike, IgG level, kappa, kappa/lambda ratio, hemoglobin, calcium and creatinine levels. Make sure you get copies of all your lab reports each time you see the doctor and become comfortable with being able to read them yourself. I like graphing my key markers over time to see if anything is significantly changing and/or signalling a move to a different stage (in your case, that would be smoldering multiple myeloma).

I'm going to guess that you will likely get tested every 3-6 months for the first year or so? And I assume you have already had a skeletal xray survey, MRI or PET/CT?

Regarding rashes and other questions like that, get to know the advanced search function at the top of the forum page. You can easily find threads like this one:

https://myelomabeacon.org/forum/rashes-mgus-smoldering-myeloma-t3830.html?hilit=Rash%20MGUS

Lastly, remember that the chance of MGUS progressing to symptomatic multiple myeloma is quite low (1.5 - 2%/year).

Again, welcome to the forum.

[SydneyJean]

Re: New Kid on the Block

by SydneyJean on Tue Apr 12, 2016 7:46 pm

Thank you so much for the welcome. I appreciate your logical approach and will follow it.